Join us now to bring ME/CFS Awareness to the US Senate!
Senator Ed Markey of Massachusetts has agreed to lead a Senate Resolution for ME/CFS. The resolution is intended to raise awareness and voice the position of the Senate regarding ME/CFS. Specifically, it highlights the prevalence and effects of ME/CFS, encourages the NIH and other federal agencies to support research, and calls upon the medical community to improve medical education and training efforts.
You can use the form below to send a message to your Senators, asking them to join Senator Markey in this historic effort.
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I am writing to ask the Senator to co-sponsor S. Res 508 - a tri-partisan resolution for myalgic encephalomyelitis, often called chronic fatigue syndrome, or ME/CFS. This resolution has been introduced by Senator Markey with co-sponsorship from Senators Collins, Van Hollen and King. May is ME/CFS Awareness month. As you may know, ME/CFS is a complex, multi-system disease with no diagnostic tool, FDA-approved treatment, or cure. A 2015 report by the National Academy of Medicine estimated that ME/CFS disables between 836,000 and 2.5 million people in the United States, more than HIV/AIDs and Multiple Sclerosis (MS) combined. Recovery is rare, estimated at 5-10%, and most patients suffer for life. This May is the perfect time for the Senate to voice its support for millions with ME/CFS. I am asking the Senator to please stand with us and become a co-sponsor of this resolution. Please contact Nikki Hurt (Nikki_Hurt@markey.senate.gov) in the office of Senator Ed Markey to co-sponsor this Resolution. ********************* DRAFT SENATE RESOLUTION As of May 9, 2018 Supporting the goals of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome International Awareness Day. Whereas the Health and Medicine Division of the National Academies of Sciences, Engineering, and Medicine (referred to in this preamble as ‘‘HMD’’), formerly known as the Institute of Medicine, has found Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (referred to in this preamble as ‘‘ME/CFS’’) to be ‘‘a serious, chronic, complex, and systemic disease that frequently and dramatically limits the activities of affected patients’’; Whereas between 836,000 and 2,500,000 individuals of all ages, races, and sexes in the United States are believed to be afflicted with ME/CFS, with millions more afflicted by ME/CFS worldwide, and the vast majority of individuals with ME/CFS are undiagnosed or misdiagnosed; Whereas ME/CFS is approximately 4 times more prevalent in women than in men; Whereas ME/CFS is a chronic disease that persists for decades and leaves 1⁄4 of individuals with ME/CFS housebound or bedbound, often for years; Whereas 50 to 75 percent of individuals with ME/CFS cannot work or attend school; Whereas medical expenses and lost productivity related to ME/CFS cost the economy of the United States $17,000,000,000 to $24,000,000,000 annually; Whereas, in a recent study, individuals with ME/CFS scored more poorly in health-related quality of life surveys than individuals with any other disease measured; Whereas individuals with ME/CFS have been found to be more functionally impaired than individuals with other disabling illnesses, including type 2 diabetes mellitus, congestive heart failure, hypertension, depression, multiple sclerosis, and end-stage renal disease; Whereas the cause of ME/CFS is unknown, there is no diagnostic test for ME/CFS, and there is no treatment for ME/CFS that is approved by the Food and Drug Administration; Whereas HMD has noted a ‘‘paucity of research’’ on ME/ CFS and that ‘‘more research is essential’’; Whereas individuals with ME/CFS struggle to find doctors who are willing and able to care for them and ME/CFS is included in less than 1⁄3 of medical curricula; Whereas, in recognition of the dearth of research on ME/CFS and the profound impact that the disease has on individuals with ME/CFS and their loved ones and caretakers, the National Institutes of Health (referred to in this preamble as ‘‘NIH’’) is ‘‘committed to unraveling the underlying biologic cause(s) of ME/CFS as swiftly as possible, and promoting research that will inform the development of effective strategies for treatment and prevention of this devastating condition’’; Whereas, in 2017, 11 Institutes at the NIH that participate in the Trans-NIH Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Working Group and the Office of the Director of the NIH contributed more than $7,000,000 in grants to assist in establishing Collaborative Research Centers and a Data Management Coordinating Center to improve the coordination of ME/CFS research and help accelerate understanding of ME/CFS Whereas, in 2018, May 12 is recognized as International Awareness Day for ME/CFS and other neurological conditions: Now, therefore, be it Resolved, That the Senate— (1) supports the goals of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome International Awareness Day; (2) recognizes and affirms the commitment of the United States to— (A) discovering the cause of, and a cure for, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; and (B) improving the availability and quality of medical care for individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; and (3) encourages— (A) the National Institutes of Health and other Federal agencies to work with experts, stakeholders, and individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome to— (i) consider the recommendations of the National Academies of Sciences, Engineering, and Medicine relating to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; and (ii) support research to discover the cause of, and a cure for, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; and (B) the medical community to enhance practitioner training to provide appropriate and accessible care for individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.
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